Original Article
Infant Cardiac Surgery: Mothers Tell Their Story: A Therapeutic Experience
World Journal for Pediatric and Congenital Heart Surgery 4(3) 278-285 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/2150135113481480 pch.sagepub.com
Jennifer Re, PhD1,2,3,4,5, Suzanne Dean, PhD1, and Samuel Menahem, MD1,2,3
Abstract Background: Serious congenital heart disease frequently requires major congenital heart surgery. It causes much distress for parents, which may not always be recognized and treated appropriately. Patients and Methods: As part of a larger study, 26 mothers of two-month-old infants subjected to recent cardiac surgery were interviewed in depth. Each mother was invited to describe her own and what she perceived were her infant’s experiences and to comment on the interview process. A systematic content analysis of the interviews was performed using qualitative research methodology. Results: Almost all participants described acute stress symptoms relating to the diagnosis and the infant’s surgery. In addition, most mothers reported that the interview helped them to think about and integrate what had happened to them and their infant, suggesting a probable therapeutic value to the interview. Conclusions: A suitably qualified and experienced mental health professional, assisting the mother to tell her story about the diagnosis and her infant’s cardiac surgery, may provide a valuable, brief, and very cost-effective therapeutic intervention for these mothers and infants. It has the potential to alleviate maternal distress, with associated gains for the developing mother–infant relationship, reducing infant morbidity, and enhancing the quality of life for both infant and mother. Keywords congenital heart disease, infant, congenital heart surgery, morbidity, quality of life Submitted October 12, 2012; Accepted January 23, 2013. Presented in part at the World Congress of Pediatric Cardiology and Cardiac Surgery, Cairns, Australia; July 2009.
Introduction Congenital heart disease (CHD) remains a major cause of infant mortality and morbidity despite major advances.1-3 The improved survival among such infants has led to a growing interest in the psychological experiences of these parents and infants and how to support them. Parents of children with heart disease are vulnerable to complex psychosocial stresses.4-6 Parents may be at risk of long-term psychological health issues.6-8 Parental distress may contribute to later psychoemotional issues in their children with CHD.9 Establishing the parent–infant relationship early is important, and studies have linked maternal–infant interactions with infant development.10-12 Maternal depression has been long known to compromise the mother–infant relationship.13,14 Studies have noted high levels of stress including depression in mothers of infants with CHD.8,15,16 A recent study found high levels of maternal depression in mothers of infants with CHD, and an association between maternal distress as measured by maternal depression, anxiety and stress, and infant social withdrawal.17 There are ample grounds for more comprehensive psychological support to these parents and children, and there is a potential
to improve medical counseling.6,15,18,19 Accordingly, a broad study was designed to explore the experiences of mothers of infants with CHD who required surgery in early infancy. As well as exploring maternal reflections upon experiences in a holistic way, the study targeted maternal stress and infant socioemotional well-being and potential differences in stress levels between mother and infant, where the diagnosis was made prenatally, as opposed to postnatally. The detailed
1 Department of Psychological Medicine, School of Psychology and Psychiatry, Monash University, Melbourne, Victoria, Australia 2 Murdoch Childrens’ Research Institute, Melbourne, Victoria, Australia 3 MonashHeart, Monash Medical Centre, Clayton Victoria, Australia 4 Department of Cardiology and Child Psychotherapy, Royal Children’s Hospital, Melbourne, Victoria, Australia 5 Psychotherapy Department, Auckland University of Technology, Aotearoa, New Zealand
Corresponding Author: Samuel Menahem, MonashHeart, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3168, Australia. Email: [email protected]
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findings of this study, which found very high levels of stress among all the mothers, are reported elsewhere.17,20 This article reports how a qualitative in-depth interview was experienced by mothers in the context of the considerable stress revealed by the wider study. The findings relating to two parts of the interview are documented, one concerning the emotional challenge brought by the infant’s CHD and the other relating to the mothers’ experiences of the interview process itself.
Patients and Methods Qualitative Methods Qualitative research is now recognized for its potential to make valuable contributions to health settings. It is an appropriate and thorough method for exploring the complexity of human experience in clinical settings. By developing a body of knowledge about the lived experience for specific patient groups, it has potential to identifying unmet emotional needs in vulnerable patients so that appropriate and responsive services may be designed.21 Qualitative researchers seek to understand people from the inside, looking for underlying motives and unexpressed feelings, in order to explain and interpret experience and behavior.22 These complex aspects of social experience, collected as nonnumerical data, are of particular interest to qualitative researchers and do not need to be controlled for as in quantitative science. Qualitative inquiry assumes that neutrality is not possible or desirable. However, transparency about the qualities the researcher brings to the researched setting is considered very important. A child psychotherapist is well-suited in conducting qualitative research, being trained in skills of personal reflection for maintaining transparency about their own approach and values. In the present study, an in-depth interview with mothers was the selected method of qualitative data gathering, to be audiotaped and transcribed for later qualitative thematic content analysis.
Recruitment Participants were recruited consecutively during the newborn period or on an admission to the surgical center. Parents were initially approached by a cardiologist or cardiac surgeon (who also collated the clinical information and surgical outcomes). Interested parents were contacted by the researcher (JR). Approval was granted by the relevant human research and university ethics committees. Data collection occurred when infants were two months old, after surgery in most cases. The infants and their mothers participated in a series of assessments using standardized scales (not reported here). Mothers further participated in an in-depth, semistructured interview, lasting about an hour, and their reflections upon their participation were sought. The interview was conducted by an experienced child psychotherapist (JR).
Nature of the Sample Over a nine-month period, 114 young infants requiring surgery for CHD were admitted to the state’s only pediatric cardiac surgical center. Wherever possible, consecutive recruitment was carried out; of the 114 admitted, 35 mother–infant dyads did not fulfill the inclusion criteria. For 44 parents, either no information was available or for logistic and resource reasons some were missed. For example, the patient was transferred to a different hospital following surgery, or patients were discharged before the referrer was able to provide information about the study. Of the remaining 35, eight declined to participate. Thus, 27 mother–infant dyads were recruited and 26 maternal interviews were available for the analysis. The infant inclusion criteria were(1) serious CHD, (2) the likelihood of having early surgery in the first months of life, (3) at least 36 weeks gestation, (4) had no known chromosomal, genetic, or syndrome disorder, and (5) clinically stable at the time of recruitment. The inclusion criteria for mothers were (1) aged between 16 and 45 years, (2) ability to read English, (3) not intellectually disabled, and (4) geographically conveniently located.
Design of the Interview The interview was structured to explore the mother’s experiences and perceptions of (1) herself as a mother, (2) her infant’s experience (as a person/individual), (3) the diagnosis and treatment of her infant’s CHD, (4) her infant’s experience of the illness and treatment, and (5) her participation in the research. The researcher attempted to elicit as much information as possible about the mother’s sense of her developing relationship with her infant. The researcher explained the interview to mothers stating that she wanted to understand the lived experience of being a parent when the baby has a serious illness. Mothers were asked questions in roughly the same order. The responses may have been comprehensive, covering more than one area, while others required further probing to clarify their meaning. The final question always asked was ‘‘What has the experience of participating in this research been like for you, and especially, your experience of being interviewed today?’’
Interview Data Analysis Following Miles and Huberman’s23 rigorous method of qualitative thematic content analysis, the themes both common and individual to mothers were brought to light. Patterns of meaning were identified and organized in the following way. Each participant’s record was formatted into a spreadsheet file with interview content arranged under relevant domains of meaning (see Appendix A). The spreadsheet allowed inspection of those domains to facilitate identifying emergent themes and thence higher order themes. Reviewing and refining themes thus, across the entire data set, generated a thematic map of the analysis.24
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Charts of the emergent themes and higher order themes within each domain were created, as demonstrated below.
Upon separation at birth:
Results The infants had complex CHD (Table 1). The diagnoses varied from an isolated ventricular septal defect to a hypoplastic left heart syndrome (HLHS). At the time of interview, they were two months old, and all but two had their definitive surgery with good surgical outcomes. There was one death at seven weeks, a baby with an obstructed total anomalous pulmonary venous drainage who did poorly postoperatively. All the infants with univentricular physiology were diagnosed prenatally. The sample group included a disproportionate number of infants with HLHS, as Melbourne was then the only center performing the Norwood procedure.
Mothers’ Reflections Upon Two Domains of the Interview The qualitative thematic content analysis of the interviews revealed that almost all mothers reported acute stress and posttraumatic stress symptoms. Analysis also revealed unexpectedly that, most participants found the interview helped them gain a broader reflective perspective on their traumatic experiences. Acute Stress in the Most Difficult Experience. Three main themes emerged and are summarized in Table 2. Higher order themes were the diagnosis, traumatic separations, and the stay in the intensive care unit (ICU). Some mothers named more than 1 theme. Often there were multiple, serial events with the potential of cumulative traumatic experiences for mothers. 1.
Diagnosis
All mothers experienced heightened stress of a serious cardiac abnormality in the infant at the time of diagnosis whether prenatally or postnatally. Five mothers described it as their most difficult time. Dissociation and helplessness were commonly reported. One mother’s trauma related to her three-week-old baby’s collapse from a tight coarctation of the aorta, describing it as ’’totally surreal.’’ Resuscitation both at home and at hospital helped stabilize the infant before the diagnosis was clarified. Normally, when you go to the Doctor, you tell them what happened, . . . but there was no time for that. People were running from everywhere . . . I just sat in a corner and just did nothing. The baby was out of my hands and I just didn’t know what to do.
2.
Traumatic separations
Experiences of separation from the baby were the commonest described most difficult time for mothers and generated the most varied themes.
I think the worst was probably the two times that he was taken away . . . . it was in the back of our minds that he had to go and have this procedure, and there would be the risk that he wasn’t going to survive it. And then I think him being taken away was a step closer to that happening. And I was faced with the possibility that he was going to die.
Separations for surgery and medical crises or procedures were regularly reported. One mother related the irrational terror she experienced when handing her baby over for surgery: This is to save him, this is to save him. If I run away with him, it’s not going to help him at all, you know . . . I just thought I was gonna lose him . . . it was all . . . Yeah. I thought they’re gonna take him and kill him, you know, (laughs).
In her anxiety, this mother’s cognitive processes had been affected. In her mind, help had been turned into harm, and she was irrationally terrified that the surgeon would mutilate or kill her baby. There was always anxiety and trepidation as to the timing of the surgery and waiting while surgery was underway. I think being in the waiting room, (during surgery) not knowing what’s going to happen. Sitting there and waiting, and the hours just ticking by, more and more and not knowing what has actually happened, or what will happen, and will she make it through.
3. Experiences of ICU Parents described the horror of seeing the baby in ICU. Having gone to surgery looking well, the baby returned to ICU often with the chest open, on a ventilator, and with multiple drain tubes and intravenous infusions. One mother recalled: I think seeing (him) after the procedure with his chest open and the heart beating, that was probably the hardest part of the intensive care experience. I think because it was kind of right there, there’s his heart, and it’s so fragile.
In summary, these experiences comprised symptoms of acute stress as mothers witnessed the impact of their infant’s life-threatening condition. Reflections on Mothers’ Experiences of Participating in the Research. The final question in the interview asked the mother to take an observer’s eye to her own experience of the interview. This provided a way to finish and also assisted the mother to reorient herself to the everyday world once more. It also acted as a sort of reminder about what both mother and researcher had embarked upon, an exploration of her experience and journey with her infant. Again it was a means of gaining perspective on this moment in the life of her infant and herself.
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Guarded
Partial coronary artery fistulectomy
Arterial switch and ASD and VSD closure Good Good
VSD and ASD repair PDA ligation
Multiple VSD’s ASD, VSD multiple coronary PDA fistulae, severe mitral regurgitation
TGA, VSD, ASD
Good
TAPVD repair
TAPVD
Good
Norwood S1
Norwood S1
Good
HLHS
HLHS
Good
Good
Good
Good
PA band
Arterial switch, VSD closure, coarctation repair Good
Coarctation, VSD
Good
DILV, VSD, VSD, TGA coarctation, ASD Shunt Coarctation repair, VSD and ASD closure
Coarctation, Multiple right aortic arch VSD’s
Good
Shunt
TGA, PA, DILV
Coarctation Coarctation repair and repair PDA ligation
VSD, PDA, coarctation
Good
Arterial switch
TGA
Death
TAPVD repair
Obstructed TAPVD
Good
Unbalanced AVSD, small LV Norwood S1
Guarded
Shunt
PA, VSD, MAPCA’s
Guarded
Coarctation repair
Coarction, ASD, anomalous RSCLA
VSD and coarctation repair
Arterial switch, Arterial switch, coarctation VSD repair closure, coarctation repair Good Good
Good
VSD, coarctation
TGA, VSD, TGA, coarctation coarctation
Abbreviations: HLHS, hypoplastic left heart syndrome; HRV, hypoplastic right ventricle; TGA, transposition of the great arteries; PA, pulmonary atresia; DILV, double inlet valve; VSD, ventricular septal defect; ASD, atrial septal defect; Coarct, coarctation of the aorta; AVSD, atrioventricular septal defect; LV, left ventricle; RV, right ventricle; TOF, tetralogy of fallot; PV, pulmonary valve; TAPVD, total anomolous pulmonary venous drainage; MAPCA, major aortopulmonary collateral artery; RSCLA, right subclavian artery.
Outcome Good
Diagnosis TOF, Absent PV, hypertrophic cardiomyopathy infant of diabetic mother Surgery TOF repair
Postnatal diagnosis group
Good
Outcome Good
Good
HRV, PA, HLHS coronary/RV sinusiuds Shunt atrial Norwood S1 septectomy
Diagnosis HLHS, anomalous RSCLA Surgery Norwood S1
Prenatal diagnosis group
Table 1. Clinical Data.
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Table 2. Mothers’ Most Difficult Time (N ¼ 26). Higher Order Theme
Theme
Diagnosis Traumatic separations
Unfolding medical crisis, not knowing, then shock of Diagnosis Separation for surgery, medical crisis, or procedure Waiting for the outcome of surgery or crisis Meeting surgeon and handing over baby for surgery Separation at birth Leaving baby in hospital Separation from other child Visual shock post-surgery feeling unprepared Lack/loss of control/helplessness Worry that baby in pain Not being able to hold baby
Experiences of ICU
Number of Participants 5 11 7 6 5 2 1 11 6 3 2
Abbreviation: ICU, intensive care unit.
Table 3. Experience of the Research Interview (N ¼ 26). Number of Participants
Higher Order Theme
Theme
Integrating experience with the researcher/putting things in perspective
Integrating the whole picture; linking things Acknowledging baby’s diagnosis New understandings gained; gaining perspective Stated difficulty describing the experience, both when the feelings are known and when the feelings are not known Fragmented confusion of raw experiences, feelings, thoughts conveyed Getting it out; sharing feelings Ambivalence Anxiety Wish to help others
Containing the chaos of trauma (a struggle to find order while living through trauma) Relieving distress Anticipatory anxiety Altruism
Table 3 summarizes the mothers’ experience of participating in the research. Five higher order themes emerged: integrating the overall experience, containing the chaos of trauma, relieving distress, anticipatory anxiety, and altruism. These main themes are outlined below and illustrated in the mothers’ own words. 1.
Integrated experience with the researcher
The research interview helped 12 mothers to think about and integrate what had happened to them and their infant. It’s actually quite good because it’s making me get all my thoughts in my mind. Like I’m speaking things that I haven’t really said before to (my husband).
Acknowledging the diagnosis and all that happened, saying the words out loud to another, were part of the process of integrating and gaining perspective for four mothers: You talk to different people along the way. But you get the whole picture if you think of everything all at once.
Four told of gaining new understandings, for example:
12 4 4 10 5 10 9 4 5
I suppose it’s made me think about things that I haven’t thought about before . . . / . . . Because I don’t want to forget them, because it’s all we’ve got. (Mother whose infant died).
2. Containing the chaos of trauma Fifteen participants expressed difficulty in talking and thinking about their experiences. For five mothers, their feelings were known, for example one mother’s struggle to find words, was not because they eluded her, but because she intended to avoid and block out specific difficult feelings: You have to actually search in your head for really what you’re feeling. And sometimes you don’t want to know what you’re feeling . . .
For another five, feelings were not yet known to them and they made use of the semistructured interview process to find ways to think about and to describe their experience: It’s kind of taken me back, sort of reflecting when I’m able to think more clearly.
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Five mothers articulated the traumatic experience they had lived through with their infant. They spoke of a confusion of raw experiences, feelings, and thoughts: You don’t think too much, you’re so caught up in the rush of it all and the emotions and you know, you don’t really know what you’re actually thinking or feeling, until you sit down and think about it.
3.
Relieving distress
Nearly half of the mothers remarked on relief sharing the burden with another who listened to their painful stories: You can talk to your friends but they don’t really know what is going on. But it is really helpful to just sit here and talk to you about anything. I think it feels a bit like a weight off my shoulder.
4.
Anticipatory anxiety
Nine mothers expressed or implied ambivalence about participating in the research: Yeah, it was a little difficult to express some of the fears and the questions you’ve asked . . . . But, I’ve always been one that, it’s alright to talk about things. It doesn’t really bother me.
Four mothers felt anxious about what the interview might reveal about them as parents. One mother articulated her fear of the interviewer’s critical eye as much as her own, yet finally, she realized something was gained rather than lost: Thinking is it like a test to see how I’m bonding with (my baby)? . . . / . . . I think oh, I don’t think I’m a good parent . . . / . . . I think as I sit here and you’re asking the questions and I think I’m not coping with this very well, to think and process each step of the way, it helps.
5.
Altruism
Five mothers expressed a wish to help others by participating in the research: . . . it feels good to know that some of the things that I might say, you can actually help other people with in the future.
Participants generally reported experiencing the interview positively. It helped them to draw together their experiences and to gain perspective on what had happened to them and their baby, putting it all together in one place and time. Being invited to reflect on their experience, in most cases for the first time, allowed mothers a chance to lift themselves out of continuing within the trauma, helpless and overwhelmed by both the external events of the past several weeks and their internal reactions
to them. In short, the experience of participating was therapeutic for mothers.
Comment Two key findings are reported. Mothers whose infants had cardiac surgery were highly stressed. An in-depth interview conducted by a suitably skilled professional, where mothers told their story, may well be therapeutic. Limitations of the study included its small numbers, further research into the outcome implications is needed, and fathers were not interviewed. The mothers in the interview impressed the researcher as being willing and cooperative, despite the challenging circumstances in which they found themselves. They approached the interview in a very generous, trusting, and open frame of mind, leaving the researcher feeling privileged to be let into their lives at this time of great stress. Although the infant group included very serious abnormalities, good surgical results were achieved with only one death. Half were diagnosed prenatally and arrived at the tertiary center in a good condition. Despite parents being aware they were attending a center with an international standing, they were highly stressed. The mothers’ most difficult times related to the stress of the diagnosis and its meaning, multiple traumatic separations, especially handing baby over into surgical or medical care and waiting during surgery, and then seeing their baby in ICU. Fortuitously, mothers experienced participation in the research as helpful for several reasons. The interview invited mothers to reflect upon their own and their infant’s experiences by providing a scaffolding for their thoughts, feelings, and reflections, providing places for meaning in connection with other experiences and building meanings beyond the experience of trauma. This was the first occasion that these mothers had a time, place, and a suitably qualified professional to listen to them tell their story from the beginning. A sympathetic, patient listener who would not be shocked, or overwhelmed, waiting for words of unspeakable experiences to be found and voiced provided a nonjudgmental presence to hear the mothers’ stories. The researcher could be perceived as an independent person, with no direct role in the treatment and well-being of the baby but experienced as listening to the mother’s distress in a very different way to the treating team who were keeping her baby alive. An important role of the researcher may have been containment of the mothers’ overwhelming feelings by providing an active thinking and processing mind outside of the maelstrom of trauma to anchor the mother. The mother may have been able to make use of the researcher’s mind as an instrument to order her own thinking and so transform the raw, disconnected pieces of experience into a coherent narrative. This may assist in processing and integrating these experiences,25,26 repairing the mother’s wound and her own ‘‘broken heart.’’ Maternal unresolved trauma has been linked with infant’s insecure attachment,27 and a mother’s coherent narrative capability is
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a key quality in predicting infant’s secure-attachment style.28 Insecure attachment has been linked with later developmental vulnerability and psychopathology.29 The researcher may have been viewed as a surrogate parent, who documented and held onto the dyad’s experience over time. Finally, the last question about research participation itself may have acted as a reminder about what the mother and the interviewer had both embarked on, an exploration of experience for research purposes. It also meant the mothers knew they were not alone; there were others like them who were of interest to health professionals, signifying a phenomenon bigger than their own experience. A number of mothers even indicated that they had ‘‘learned’’ how to reflect upon their own and their infants’ experience through the structure of the interview. This was implied when mothers sometimes remarked that they had not previously thought of some aspect of their experience before being asked to think about it in the interview, especially being asked to place themselves in their infant’s shoes. A reflective capacity has been linked with healthy maternal– infant interactions.30 In brief, although surgeons may have been aware of the high anxiety levels of parents, they need to know that for some anxiety is so extreme that their cognitive functioning is impaired. It would be helpful if future research can identify those especially at risk. Surgeons could also help alleviate parents’ stress by ensuring they communicate openly about medical information and keep parents informed when surgery is delayed and during surgery letting parents know how it is progressing. Asking the mothers about their experiences of the stressful events was approached with great care. Mothers in the study had agreed to the research interview. Some divulged that they would not have chosen psychological counseling in spite of its potential to alleviate stress but did not seem put out as all the participants were interviewed. Our data suggest that much can be achieved through a one-off interview of this nature. Treatment of infants with serious CHD consumes considerable resources. The estimated cost for the first three months of an infant requiring surgery and intensive care for an HLHS is approximately quarter million dollars.3,31 In this context, a ‘‘routine’’ post-surgery interview conducted by a skilled mental health professional and as part of the holistic surgical care may provide a very cost-effective way to contribute to the parents’ well-being. This in turn may help prevent some of the potential parent–infant difficulties and later psychological problems.
Conclusion The study confirmed that mothers were very stressed prior to, during, and subsequent to their infants’ cardiac surgery. When infants with complex CHD are subjected to surgery, surgeons should understand that much is being done on trust. An in-depth interview where mothers were able to tell their story to an interested and skilled listener was found to be therapeutic and helpful to them, suggesting its routine introduction as part
of high-quality, comprehensive cardiac surgical care. It may indeed be very cost-effective.
Appendix A Qualitative Analysis of Maternal Interview Following Miles and Huberman’s23 rigorous method of systematic qualitative thematic content analysis, the themes both common and individual to mothers were brought to light. Patterns of meaning were identified and organized in the following way. Audio files of the interviews were transcribed either by the researcher or an independent transcriber. Transcriptions were checked for accuracy against the audio file and corrected where needed. Transcripts were read carefully and reread to gain an intimate familiarity with the text before being punctuated with rough notations corresponding to identified content and themes. Initial codes were assigned for explicit and implicit themes. An electronic template was created and a form filled in for each participant based on the template. Careful to preserve qualities of the original text, data were organized into the domains of inquiry summarized as potential themes. Each of these chunks of data was referenced with a page and line record, making it possible to locate any of these notations within the complete transcript and to access the relevant source text. Especially rich and exemplary quotations portraying a concept or motif were marked so that they could be redeemed and used to illustrate the identified theme. All forms were then transferred into a spreadsheet file; printouts using A4 sheets were reassembled by cutting and taping to create a large chart that could be easily read down a column for within-case analysis and across rows for cross-case scrutiny. This procedure allowed inspection of commonalities and differences for each of the domains with emergent and higher order themes being identified as a result. It enabled reviewing themes in relation to the coded extracts and the entire data set and generated a thematic map of the analysis.24 Refining themes and generating higher order themes sometimes presented challenges where deeper meanings were suggested and further analysis was necessary to fully understand their nature. Discussion with coauthors and colleagues about the researcher’s hunch was crucial to teasing out the threads of underlying themes. The researcher also diarised comments about nonverbal features of the interview and her responses at the time of interview or later. These additional data were collected to enhance transparency about the researcher’s stance and for a complete record. These data were included in discussion of the transcripts with experts and colleagues throughout the analysis process. Using the systematic thematic content analysis method indicated above, matrices of the emergent themes and higher order themes within each domain were created as demonstrated in Tables 2 and 3.
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Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: National Health and Medical Research Council scholarship awarded to the first author.
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13. Field TM. Early interactions between infants and their postpartum depressed mothers. Infant Behav Dev. 1984;7(4): 517-522. 14. Tronick E, Reck C. Infants of depressed mothers. Harv Rev Psychiatry. 2009;17(2): 147-156. 15. Menahem S. Counselling strategies for parents of infants with congenital heart disease. Cardiol Young. 1998;8(3): 400-407. 16. Aite L, Trucchi A, Nahom A, Zaccara A, Casaccia G, Bagolan P. A challenging intervention with maternal anxiety: babies requiring surgical correction of a congenital anomaly after missed prenatal diagnosis. Infant Ment Health J. 2003;24(6): 571-575. 17. Re JM, Franich-Ray C, Guedeney A, et al. Maternal distress and infant social withdrawal in infants with severe congenital heart disease at two months assessment. Infant Ment Health J. 2010; 32(3a): P331. 18. Cantwell-Bartl AM, Tibballs J. Place, age, and mode of death of infants and children with hypoplastic left heart syndrome: implications for medical counselling, psychological counselling, and palliative care. J Palliat Care. 2008;24(2): 76-84. 19. Menahem S, Grimwade J. Prenatal counseling: helping couples make decisions following the diagnosis of severe heart disease. Early Hum Dev. 2005;81(7): 601-607. 20. Re JM, Franich-Ray C, Menahem S, et al. Infant withdrawal following cardiac surgery—treat mother’s distress. Heart Lung Circ. 2011;20(suppl 2): S236. 21. Clark AM. Qualitative research: what it is and what it can contribute to cardiology in the young. Cardiol Young. 2009;19(2): 131-134. 22. Liamputtong P, Ezzy D. Qualitative Research Methods. 2nd ed. Australia: Oxford University Press; 2005. 23. Miles MB, Huberman AM. Qualitative Data Analysis. 2nd ed. Thousand Oaks, London, New Delhi: Sage Publications; 1994. 24. Braun V, Clark V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2): 77-101. 25. Bion WR. Learning from Experience. London, UK: Heinemann; 1962. 26. Bion WR. The psycho-analytic study of thinking. A theory of thinking. Int J Psychoanal. 1962;43: 306-310. 27. Lyons-Ruth K, Bronfman E, Atwood G. Relational diathesis model of hostile-helpless states of mind: expressions in mother– infant interaction. In: Solomon J, George C, eds. Attachment of Disorganization. New York, NY: The Guilford Press; 1999: 33-70. 28. Fonagy P, Steele H, Moran G, Steele M, Higgitt A. The capacity for understanding mental states: the reflective self in parent and child and its significance for security of attachment. Infant Ment Health J. 1991;12(3): 201-218. 29. Sroufe LA, Egeland B, Carlson EA, Collins WA. The Development of the Person: The Minnesota Study of Risk and Adaptation from Birth to Adulthood. New York, NY: Guilford Press; 2005. 30. Fonagy P, Target M. Bridging the transmission gap: an end to an important mystery of attachment research? Attach Hum Dev. 2005;7(3): 333-343. 31. Dean PN, Hillman DG, McHugh KE, Gutgesell HP. Inpatient costs and charges for surgical treatment of hypoplastic left heart syndrome. Pediatrics. 2011;128(5): e1181-e1186.
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Infant Cardiac Surgery: Mothers Tell Their Story: A Therapeutic Experience
World Journal for Pediatric and Congenital Heart Surgery 4(3) 278-285 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/2150135113481480 pch.sagepub.com
Jennifer Re, PhD1,2,3,4,5, Suzanne Dean, PhD1, and Samuel Menahem, MD1,2,3
Abstract Background: Serious congenital heart disease frequently requires major congenital heart surgery. It causes much distress for parents, which may not always be recognized and treated appropriately. Patients and Methods: As part of a larger study, 26 mothers of two-month-old infants subjected to recent cardiac surgery were interviewed in depth. Each mother was invited to describe her own and what she perceived were her infant’s experiences and to comment on the interview process. A systematic content analysis of the interviews was performed using qualitative research methodology. Results: Almost all participants described acute stress symptoms relating to the diagnosis and the infant’s surgery. In addition, most mothers reported that the interview helped them to think about and integrate what had happened to them and their infant, suggesting a probable therapeutic value to the interview. Conclusions: A suitably qualified and experienced mental health professional, assisting the mother to tell her story about the diagnosis and her infant’s cardiac surgery, may provide a valuable, brief, and very cost-effective therapeutic intervention for these mothers and infants. It has the potential to alleviate maternal distress, with associated gains for the developing mother–infant relationship, reducing infant morbidity, and enhancing the quality of life for both infant and mother. Keywords congenital heart disease, infant, congenital heart surgery, morbidity, quality of life Submitted October 12, 2012; Accepted January 23, 2013. Presented in part at the World Congress of Pediatric Cardiology and Cardiac Surgery, Cairns, Australia; July 2009.
Introduction Congenital heart disease (CHD) remains a major cause of infant mortality and morbidity despite major advances.1-3 The improved survival among such infants has led to a growing interest in the psychological experiences of these parents and infants and how to support them. Parents of children with heart disease are vulnerable to complex psychosocial stresses.4-6 Parents may be at risk of long-term psychological health issues.6-8 Parental distress may contribute to later psychoemotional issues in their children with CHD.9 Establishing the parent–infant relationship early is important, and studies have linked maternal–infant interactions with infant development.10-12 Maternal depression has been long known to compromise the mother–infant relationship.13,14 Studies have noted high levels of stress including depression in mothers of infants with CHD.8,15,16 A recent study found high levels of maternal depression in mothers of infants with CHD, and an association between maternal distress as measured by maternal depression, anxiety and stress, and infant social withdrawal.17 There are ample grounds for more comprehensive psychological support to these parents and children, and there is a potential
to improve medical counseling.6,15,18,19 Accordingly, a broad study was designed to explore the experiences of mothers of infants with CHD who required surgery in early infancy. As well as exploring maternal reflections upon experiences in a holistic way, the study targeted maternal stress and infant socioemotional well-being and potential differences in stress levels between mother and infant, where the diagnosis was made prenatally, as opposed to postnatally. The detailed
1 Department of Psychological Medicine, School of Psychology and Psychiatry, Monash University, Melbourne, Victoria, Australia 2 Murdoch Childrens’ Research Institute, Melbourne, Victoria, Australia 3 MonashHeart, Monash Medical Centre, Clayton Victoria, Australia 4 Department of Cardiology and Child Psychotherapy, Royal Children’s Hospital, Melbourne, Victoria, Australia 5 Psychotherapy Department, Auckland University of Technology, Aotearoa, New Zealand
Corresponding Author: Samuel Menahem, MonashHeart, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3168, Australia. Email: [email protected]
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findings of this study, which found very high levels of stress among all the mothers, are reported elsewhere.17,20 This article reports how a qualitative in-depth interview was experienced by mothers in the context of the considerable stress revealed by the wider study. The findings relating to two parts of the interview are documented, one concerning the emotional challenge brought by the infant’s CHD and the other relating to the mothers’ experiences of the interview process itself.
Patients and Methods Qualitative Methods Qualitative research is now recognized for its potential to make valuable contributions to health settings. It is an appropriate and thorough method for exploring the complexity of human experience in clinical settings. By developing a body of knowledge about the lived experience for specific patient groups, it has potential to identifying unmet emotional needs in vulnerable patients so that appropriate and responsive services may be designed.21 Qualitative researchers seek to understand people from the inside, looking for underlying motives and unexpressed feelings, in order to explain and interpret experience and behavior.22 These complex aspects of social experience, collected as nonnumerical data, are of particular interest to qualitative researchers and do not need to be controlled for as in quantitative science. Qualitative inquiry assumes that neutrality is not possible or desirable. However, transparency about the qualities the researcher brings to the researched setting is considered very important. A child psychotherapist is well-suited in conducting qualitative research, being trained in skills of personal reflection for maintaining transparency about their own approach and values. In the present study, an in-depth interview with mothers was the selected method of qualitative data gathering, to be audiotaped and transcribed for later qualitative thematic content analysis.
Recruitment Participants were recruited consecutively during the newborn period or on an admission to the surgical center. Parents were initially approached by a cardiologist or cardiac surgeon (who also collated the clinical information and surgical outcomes). Interested parents were contacted by the researcher (JR). Approval was granted by the relevant human research and university ethics committees. Data collection occurred when infants were two months old, after surgery in most cases. The infants and their mothers participated in a series of assessments using standardized scales (not reported here). Mothers further participated in an in-depth, semistructured interview, lasting about an hour, and their reflections upon their participation were sought. The interview was conducted by an experienced child psychotherapist (JR).
Nature of the Sample Over a nine-month period, 114 young infants requiring surgery for CHD were admitted to the state’s only pediatric cardiac surgical center. Wherever possible, consecutive recruitment was carried out; of the 114 admitted, 35 mother–infant dyads did not fulfill the inclusion criteria. For 44 parents, either no information was available or for logistic and resource reasons some were missed. For example, the patient was transferred to a different hospital following surgery, or patients were discharged before the referrer was able to provide information about the study. Of the remaining 35, eight declined to participate. Thus, 27 mother–infant dyads were recruited and 26 maternal interviews were available for the analysis. The infant inclusion criteria were(1) serious CHD, (2) the likelihood of having early surgery in the first months of life, (3) at least 36 weeks gestation, (4) had no known chromosomal, genetic, or syndrome disorder, and (5) clinically stable at the time of recruitment. The inclusion criteria for mothers were (1) aged between 16 and 45 years, (2) ability to read English, (3) not intellectually disabled, and (4) geographically conveniently located.
Design of the Interview The interview was structured to explore the mother’s experiences and perceptions of (1) herself as a mother, (2) her infant’s experience (as a person/individual), (3) the diagnosis and treatment of her infant’s CHD, (4) her infant’s experience of the illness and treatment, and (5) her participation in the research. The researcher attempted to elicit as much information as possible about the mother’s sense of her developing relationship with her infant. The researcher explained the interview to mothers stating that she wanted to understand the lived experience of being a parent when the baby has a serious illness. Mothers were asked questions in roughly the same order. The responses may have been comprehensive, covering more than one area, while others required further probing to clarify their meaning. The final question always asked was ‘‘What has the experience of participating in this research been like for you, and especially, your experience of being interviewed today?’’
Interview Data Analysis Following Miles and Huberman’s23 rigorous method of qualitative thematic content analysis, the themes both common and individual to mothers were brought to light. Patterns of meaning were identified and organized in the following way. Each participant’s record was formatted into a spreadsheet file with interview content arranged under relevant domains of meaning (see Appendix A). The spreadsheet allowed inspection of those domains to facilitate identifying emergent themes and thence higher order themes. Reviewing and refining themes thus, across the entire data set, generated a thematic map of the analysis.24
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Charts of the emergent themes and higher order themes within each domain were created, as demonstrated below.
Upon separation at birth:
Results The infants had complex CHD (Table 1). The diagnoses varied from an isolated ventricular septal defect to a hypoplastic left heart syndrome (HLHS). At the time of interview, they were two months old, and all but two had their definitive surgery with good surgical outcomes. There was one death at seven weeks, a baby with an obstructed total anomalous pulmonary venous drainage who did poorly postoperatively. All the infants with univentricular physiology were diagnosed prenatally. The sample group included a disproportionate number of infants with HLHS, as Melbourne was then the only center performing the Norwood procedure.
Mothers’ Reflections Upon Two Domains of the Interview The qualitative thematic content analysis of the interviews revealed that almost all mothers reported acute stress and posttraumatic stress symptoms. Analysis also revealed unexpectedly that, most participants found the interview helped them gain a broader reflective perspective on their traumatic experiences. Acute Stress in the Most Difficult Experience. Three main themes emerged and are summarized in Table 2. Higher order themes were the diagnosis, traumatic separations, and the stay in the intensive care unit (ICU). Some mothers named more than 1 theme. Often there were multiple, serial events with the potential of cumulative traumatic experiences for mothers. 1.
Diagnosis
All mothers experienced heightened stress of a serious cardiac abnormality in the infant at the time of diagnosis whether prenatally or postnatally. Five mothers described it as their most difficult time. Dissociation and helplessness were commonly reported. One mother’s trauma related to her three-week-old baby’s collapse from a tight coarctation of the aorta, describing it as ’’totally surreal.’’ Resuscitation both at home and at hospital helped stabilize the infant before the diagnosis was clarified. Normally, when you go to the Doctor, you tell them what happened, . . . but there was no time for that. People were running from everywhere . . . I just sat in a corner and just did nothing. The baby was out of my hands and I just didn’t know what to do.
2.
Traumatic separations
Experiences of separation from the baby were the commonest described most difficult time for mothers and generated the most varied themes.
I think the worst was probably the two times that he was taken away . . . . it was in the back of our minds that he had to go and have this procedure, and there would be the risk that he wasn’t going to survive it. And then I think him being taken away was a step closer to that happening. And I was faced with the possibility that he was going to die.
Separations for surgery and medical crises or procedures were regularly reported. One mother related the irrational terror she experienced when handing her baby over for surgery: This is to save him, this is to save him. If I run away with him, it’s not going to help him at all, you know . . . I just thought I was gonna lose him . . . it was all . . . Yeah. I thought they’re gonna take him and kill him, you know, (laughs).
In her anxiety, this mother’s cognitive processes had been affected. In her mind, help had been turned into harm, and she was irrationally terrified that the surgeon would mutilate or kill her baby. There was always anxiety and trepidation as to the timing of the surgery and waiting while surgery was underway. I think being in the waiting room, (during surgery) not knowing what’s going to happen. Sitting there and waiting, and the hours just ticking by, more and more and not knowing what has actually happened, or what will happen, and will she make it through.
3. Experiences of ICU Parents described the horror of seeing the baby in ICU. Having gone to surgery looking well, the baby returned to ICU often with the chest open, on a ventilator, and with multiple drain tubes and intravenous infusions. One mother recalled: I think seeing (him) after the procedure with his chest open and the heart beating, that was probably the hardest part of the intensive care experience. I think because it was kind of right there, there’s his heart, and it’s so fragile.
In summary, these experiences comprised symptoms of acute stress as mothers witnessed the impact of their infant’s life-threatening condition. Reflections on Mothers’ Experiences of Participating in the Research. The final question in the interview asked the mother to take an observer’s eye to her own experience of the interview. This provided a way to finish and also assisted the mother to reorient herself to the everyday world once more. It also acted as a sort of reminder about what both mother and researcher had embarked upon, an exploration of her experience and journey with her infant. Again it was a means of gaining perspective on this moment in the life of her infant and herself.
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Guarded
Partial coronary artery fistulectomy
Arterial switch and ASD and VSD closure Good Good
VSD and ASD repair PDA ligation
Multiple VSD’s ASD, VSD multiple coronary PDA fistulae, severe mitral regurgitation
TGA, VSD, ASD
Good
TAPVD repair
TAPVD
Good
Norwood S1
Norwood S1
Good
HLHS
HLHS
Good
Good
Good
Good
PA band
Arterial switch, VSD closure, coarctation repair Good
Coarctation, VSD
Good
DILV, VSD, VSD, TGA coarctation, ASD Shunt Coarctation repair, VSD and ASD closure
Coarctation, Multiple right aortic arch VSD’s
Good
Shunt
TGA, PA, DILV
Coarctation Coarctation repair and repair PDA ligation
VSD, PDA, coarctation
Good
Arterial switch
TGA
Death
TAPVD repair
Obstructed TAPVD
Good
Unbalanced AVSD, small LV Norwood S1
Guarded
Shunt
PA, VSD, MAPCA’s
Guarded
Coarctation repair
Coarction, ASD, anomalous RSCLA
VSD and coarctation repair
Arterial switch, Arterial switch, coarctation VSD repair closure, coarctation repair Good Good
Good
VSD, coarctation
TGA, VSD, TGA, coarctation coarctation
Abbreviations: HLHS, hypoplastic left heart syndrome; HRV, hypoplastic right ventricle; TGA, transposition of the great arteries; PA, pulmonary atresia; DILV, double inlet valve; VSD, ventricular septal defect; ASD, atrial septal defect; Coarct, coarctation of the aorta; AVSD, atrioventricular septal defect; LV, left ventricle; RV, right ventricle; TOF, tetralogy of fallot; PV, pulmonary valve; TAPVD, total anomolous pulmonary venous drainage; MAPCA, major aortopulmonary collateral artery; RSCLA, right subclavian artery.
Outcome Good
Diagnosis TOF, Absent PV, hypertrophic cardiomyopathy infant of diabetic mother Surgery TOF repair
Postnatal diagnosis group
Good
Outcome Good
Good
HRV, PA, HLHS coronary/RV sinusiuds Shunt atrial Norwood S1 septectomy
Diagnosis HLHS, anomalous RSCLA Surgery Norwood S1
Prenatal diagnosis group
Table 1. Clinical Data.
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Table 2. Mothers’ Most Difficult Time (N ¼ 26). Higher Order Theme
Theme
Diagnosis Traumatic separations
Unfolding medical crisis, not knowing, then shock of Diagnosis Separation for surgery, medical crisis, or procedure Waiting for the outcome of surgery or crisis Meeting surgeon and handing over baby for surgery Separation at birth Leaving baby in hospital Separation from other child Visual shock post-surgery feeling unprepared Lack/loss of control/helplessness Worry that baby in pain Not being able to hold baby
Experiences of ICU
Number of Participants 5 11 7 6 5 2 1 11 6 3 2
Abbreviation: ICU, intensive care unit.
Table 3. Experience of the Research Interview (N ¼ 26). Number of Participants
Higher Order Theme
Theme
Integrating experience with the researcher/putting things in perspective
Integrating the whole picture; linking things Acknowledging baby’s diagnosis New understandings gained; gaining perspective Stated difficulty describing the experience, both when the feelings are known and when the feelings are not known Fragmented confusion of raw experiences, feelings, thoughts conveyed Getting it out; sharing feelings Ambivalence Anxiety Wish to help others
Containing the chaos of trauma (a struggle to find order while living through trauma) Relieving distress Anticipatory anxiety Altruism
Table 3 summarizes the mothers’ experience of participating in the research. Five higher order themes emerged: integrating the overall experience, containing the chaos of trauma, relieving distress, anticipatory anxiety, and altruism. These main themes are outlined below and illustrated in the mothers’ own words. 1.
Integrated experience with the researcher
The research interview helped 12 mothers to think about and integrate what had happened to them and their infant. It’s actually quite good because it’s making me get all my thoughts in my mind. Like I’m speaking things that I haven’t really said before to (my husband).
Acknowledging the diagnosis and all that happened, saying the words out loud to another, were part of the process of integrating and gaining perspective for four mothers: You talk to different people along the way. But you get the whole picture if you think of everything all at once.
Four told of gaining new understandings, for example:
12 4 4 10 5 10 9 4 5
I suppose it’s made me think about things that I haven’t thought about before . . . / . . . Because I don’t want to forget them, because it’s all we’ve got. (Mother whose infant died).
2. Containing the chaos of trauma Fifteen participants expressed difficulty in talking and thinking about their experiences. For five mothers, their feelings were known, for example one mother’s struggle to find words, was not because they eluded her, but because she intended to avoid and block out specific difficult feelings: You have to actually search in your head for really what you’re feeling. And sometimes you don’t want to know what you’re feeling . . .
For another five, feelings were not yet known to them and they made use of the semistructured interview process to find ways to think about and to describe their experience: It’s kind of taken me back, sort of reflecting when I’m able to think more clearly.
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Five mothers articulated the traumatic experience they had lived through with their infant. They spoke of a confusion of raw experiences, feelings, and thoughts: You don’t think too much, you’re so caught up in the rush of it all and the emotions and you know, you don’t really know what you’re actually thinking or feeling, until you sit down and think about it.
3.
Relieving distress
Nearly half of the mothers remarked on relief sharing the burden with another who listened to their painful stories: You can talk to your friends but they don’t really know what is going on. But it is really helpful to just sit here and talk to you about anything. I think it feels a bit like a weight off my shoulder.
4.
Anticipatory anxiety
Nine mothers expressed or implied ambivalence about participating in the research: Yeah, it was a little difficult to express some of the fears and the questions you’ve asked . . . . But, I’ve always been one that, it’s alright to talk about things. It doesn’t really bother me.
Four mothers felt anxious about what the interview might reveal about them as parents. One mother articulated her fear of the interviewer’s critical eye as much as her own, yet finally, she realized something was gained rather than lost: Thinking is it like a test to see how I’m bonding with (my baby)? . . . / . . . I think oh, I don’t think I’m a good parent . . . / . . . I think as I sit here and you’re asking the questions and I think I’m not coping with this very well, to think and process each step of the way, it helps.
5.
Altruism
Five mothers expressed a wish to help others by participating in the research: . . . it feels good to know that some of the things that I might say, you can actually help other people with in the future.
Participants generally reported experiencing the interview positively. It helped them to draw together their experiences and to gain perspective on what had happened to them and their baby, putting it all together in one place and time. Being invited to reflect on their experience, in most cases for the first time, allowed mothers a chance to lift themselves out of continuing within the trauma, helpless and overwhelmed by both the external events of the past several weeks and their internal reactions
to them. In short, the experience of participating was therapeutic for mothers.
Comment Two key findings are reported. Mothers whose infants had cardiac surgery were highly stressed. An in-depth interview conducted by a suitably skilled professional, where mothers told their story, may well be therapeutic. Limitations of the study included its small numbers, further research into the outcome implications is needed, and fathers were not interviewed. The mothers in the interview impressed the researcher as being willing and cooperative, despite the challenging circumstances in which they found themselves. They approached the interview in a very generous, trusting, and open frame of mind, leaving the researcher feeling privileged to be let into their lives at this time of great stress. Although the infant group included very serious abnormalities, good surgical results were achieved with only one death. Half were diagnosed prenatally and arrived at the tertiary center in a good condition. Despite parents being aware they were attending a center with an international standing, they were highly stressed. The mothers’ most difficult times related to the stress of the diagnosis and its meaning, multiple traumatic separations, especially handing baby over into surgical or medical care and waiting during surgery, and then seeing their baby in ICU. Fortuitously, mothers experienced participation in the research as helpful for several reasons. The interview invited mothers to reflect upon their own and their infant’s experiences by providing a scaffolding for their thoughts, feelings, and reflections, providing places for meaning in connection with other experiences and building meanings beyond the experience of trauma. This was the first occasion that these mothers had a time, place, and a suitably qualified professional to listen to them tell their story from the beginning. A sympathetic, patient listener who would not be shocked, or overwhelmed, waiting for words of unspeakable experiences to be found and voiced provided a nonjudgmental presence to hear the mothers’ stories. The researcher could be perceived as an independent person, with no direct role in the treatment and well-being of the baby but experienced as listening to the mother’s distress in a very different way to the treating team who were keeping her baby alive. An important role of the researcher may have been containment of the mothers’ overwhelming feelings by providing an active thinking and processing mind outside of the maelstrom of trauma to anchor the mother. The mother may have been able to make use of the researcher’s mind as an instrument to order her own thinking and so transform the raw, disconnected pieces of experience into a coherent narrative. This may assist in processing and integrating these experiences,25,26 repairing the mother’s wound and her own ‘‘broken heart.’’ Maternal unresolved trauma has been linked with infant’s insecure attachment,27 and a mother’s coherent narrative capability is
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a key quality in predicting infant’s secure-attachment style.28 Insecure attachment has been linked with later developmental vulnerability and psychopathology.29 The researcher may have been viewed as a surrogate parent, who documented and held onto the dyad’s experience over time. Finally, the last question about research participation itself may have acted as a reminder about what the mother and the interviewer had both embarked on, an exploration of experience for research purposes. It also meant the mothers knew they were not alone; there were others like them who were of interest to health professionals, signifying a phenomenon bigger than their own experience. A number of mothers even indicated that they had ‘‘learned’’ how to reflect upon their own and their infants’ experience through the structure of the interview. This was implied when mothers sometimes remarked that they had not previously thought of some aspect of their experience before being asked to think about it in the interview, especially being asked to place themselves in their infant’s shoes. A reflective capacity has been linked with healthy maternal– infant interactions.30 In brief, although surgeons may have been aware of the high anxiety levels of parents, they need to know that for some anxiety is so extreme that their cognitive functioning is impaired. It would be helpful if future research can identify those especially at risk. Surgeons could also help alleviate parents’ stress by ensuring they communicate openly about medical information and keep parents informed when surgery is delayed and during surgery letting parents know how it is progressing. Asking the mothers about their experiences of the stressful events was approached with great care. Mothers in the study had agreed to the research interview. Some divulged that they would not have chosen psychological counseling in spite of its potential to alleviate stress but did not seem put out as all the participants were interviewed. Our data suggest that much can be achieved through a one-off interview of this nature. Treatment of infants with serious CHD consumes considerable resources. The estimated cost for the first three months of an infant requiring surgery and intensive care for an HLHS is approximately quarter million dollars.3,31 In this context, a ‘‘routine’’ post-surgery interview conducted by a skilled mental health professional and as part of the holistic surgical care may provide a very cost-effective way to contribute to the parents’ well-being. This in turn may help prevent some of the potential parent–infant difficulties and later psychological problems.
Conclusion The study confirmed that mothers were very stressed prior to, during, and subsequent to their infants’ cardiac surgery. When infants with complex CHD are subjected to surgery, surgeons should understand that much is being done on trust. An in-depth interview where mothers were able to tell their story to an interested and skilled listener was found to be therapeutic and helpful to them, suggesting its routine introduction as part
of high-quality, comprehensive cardiac surgical care. It may indeed be very cost-effective.
Appendix A Qualitative Analysis of Maternal Interview Following Miles and Huberman’s23 rigorous method of systematic qualitative thematic content analysis, the themes both common and individual to mothers were brought to light. Patterns of meaning were identified and organized in the following way. Audio files of the interviews were transcribed either by the researcher or an independent transcriber. Transcriptions were checked for accuracy against the audio file and corrected where needed. Transcripts were read carefully and reread to gain an intimate familiarity with the text before being punctuated with rough notations corresponding to identified content and themes. Initial codes were assigned for explicit and implicit themes. An electronic template was created and a form filled in for each participant based on the template. Careful to preserve qualities of the original text, data were organized into the domains of inquiry summarized as potential themes. Each of these chunks of data was referenced with a page and line record, making it possible to locate any of these notations within the complete transcript and to access the relevant source text. Especially rich and exemplary quotations portraying a concept or motif were marked so that they could be redeemed and used to illustrate the identified theme. All forms were then transferred into a spreadsheet file; printouts using A4 sheets were reassembled by cutting and taping to create a large chart that could be easily read down a column for within-case analysis and across rows for cross-case scrutiny. This procedure allowed inspection of commonalities and differences for each of the domains with emergent and higher order themes being identified as a result. It enabled reviewing themes in relation to the coded extracts and the entire data set and generated a thematic map of the analysis.24 Refining themes and generating higher order themes sometimes presented challenges where deeper meanings were suggested and further analysis was necessary to fully understand their nature. Discussion with coauthors and colleagues about the researcher’s hunch was crucial to teasing out the threads of underlying themes. The researcher also diarised comments about nonverbal features of the interview and her responses at the time of interview or later. These additional data were collected to enhance transparency about the researcher’s stance and for a complete record. These data were included in discussion of the transcripts with experts and colleagues throughout the analysis process. Using the systematic thematic content analysis method indicated above, matrices of the emergent themes and higher order themes within each domain were created as demonstrated in Tables 2 and 3.
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Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: National Health and Medical Research Council scholarship awarded to the first author.
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